HealthSpan, Volume 8, Number 5, 1991

By Terry E. Thornton and Lynn Paltrow

When George Washington University Medical Center ("GWUMC") recently developed and adopted groundbreaking policies concerning the rights of pregnant patients to make health care decisions without court intervention, it not only reversed its position on the appropriateness of court-ordered medical care,' but resolved three years of daunting litigation against it for having subjected 27-year-old Angela Carder to a life threatening court-ordered Caesarean section in June 1987.1

Along the way, the Angela Carder case resulted in the only appellate decision in the country to address, on a fully developed legal record, a hospital's duty to its pregnant patients and the development of model hospital policies which protect the interests of both patient and institution alike. The life and death of Angela Carder focused national attention on the propriety of using courts to determine medical treatment for pregnant patients and inspired a chorus of diverse voices to condemn coercive medical treatment. In the end, GWUMC emerged from the shadows as a leader in protecting the autonomy of pregnant patients.

The Angela Carder Story

At age 13, Angela was diagnosed as suffering from a rare and fatal form of cancer. Despite the odds, she survived and was cured after years of aggressive and often experimental chemotherapy and radiation. Ten years later, however, she developed another form of cancer. She bravely fought for life again, returning to chemotherapy and radiation and resorting to multiple surgeries. Ultimately, she consented to a hemipelvectomy, the surgical removal of her left leg and hip. After more chemotherapy and radiation, there were no signs of cancer anywhere. In 1986, three years into remission and confident in her ability to rob the grim reaper, Angela married and became pregnant.
Because of her disability, she was eventually referred to the High Risk Pregnancy Clinic at GWUMC, where she was enthusiastically accepted as a teaching case.

According to her clinic obstetrician, Angela emphasized two points about her health care: she wanted to be watched closely for any signs of recurrence of cancer and, having struggled so long to survive, she wanted to be sure her own health was not compromised because of her pregnancy.

Unfortunately, during the 25th week of gestation, Angela was admitted to GWUMC and eventually diagnosed as having a lung tumor. Again, fighting to live, she wanted everything possible done to prolong her life. Surgery was ruled out, leaving chemotherapy and radiation as the only means of prolonging her life. Angela was informed that her baby was too small to be born, meaning too premature to have a good chance to survive, 2 and that her doctors did not consider intervention on behalf of the fetus appropriate until 28 weeks.3 She was also informed of the added risks to the fetus from chemotherapy and radiation, but Angela still decided to institute aggressive treatment of her cancer. This course was so clearly understood that her attending obstetricians did not consider, much less attempt, intervention for the fetus later that night when Angela's condition rapidly deteriorated, depriving Angela and the fetus of substantial amounts of vital oxygen for many hours.

The next morning, events took an unexpected turn. The hospital's administrators (who were also its liability risk managers) learned of the decision not to attempt delivery of the fetus. The administrator questioned the right of anyone but a court to make decisions affecting a potentially viable fetus, particularly in light of the political controversy over fetal rights. Although the decision was supported by Angela's parents and husband and by the obstetrical department as a whole, as consistent with the wishes of their patient, and despite the advice of legal counsel that the doctors should exercise their best medical judgment under the circumstances (which was not to deliver the - extremely premature and highly compromised fetus), the hospital required a court to decide what should be done for the fetus. Technically, the hospital sought a declaratory judgment as to "what it should do in terms of the fetus, whether to intervene and save its life."

In response to the hospital's petition, a court hearing was hastily convened at the hospital, counsel was rounded up in the hallways of the courthouse and appointed to represent Angela, counsel for the fetus was also appointed, and hospital counsel appeared for GWUMC. The hospital summoned all the witnesses who would testify at the hearing. Angela's family was brought to the hearing just before the proceedings began, with only minutes to confer with Angela's counsel. Angela's long-term cancer specialist, who had been at GWUMC the day before to consult on her case, was not contacted at all.

At the hearing, family members, including Angela's husband, opposed Caesarean surgery because Angela was not expected to be able to survive it and because all agreed that Angela would have opposed it. The treating physicians also opposed intervention based on their understanding of Angela's wishes and the clinical status of Angela and the fetus. However, a neonatologist, who had no familiarity with Angela's medical status, also testified at the hearing that the fetus had at least a 60 percent chance of survival (just slightly less than a fetus from a healthy woman at that gestational age). (Other medical experts have since concluded that there was virtually no chance of survival and that the fetus was already brain dead)

At the hearing almost no attention was paid to what was clinically best for Angela or to what she would want since, according to the hospital, it was "the apparent desire of the patient and her family" that no intervention be done on behalf of the fetus. Instead, the hearing focused on whether to "rescue" the fetus. Balancing Angela Carder's life expectancy as a cancer-ridden patient against that of the fetus (based on the neonatologist's unduly optimistic guesswork), the court ordered the Caesarean. Despite the court's order, the obstetricians refused to carry it out. The hospital was then in the ironic position of being in contempt of an order that the hospital itself had sought. Reluctantly, a staff obstetrician agreed to perform the surgery.

Although assumed to be near death and unconscious, Angela was lucid and able to communicate when, after the court made its ruling, one of her obstetricians told her about the court's decision. When her doctor explained that she might die as a result of the ordered surgery and that he would not perform the surgery without her consent, she said repeatedly, "I don't want it done." However, this declaration did not sway the hospital to withdraw its petition or the court to amend its order. A three-judge appellate panel upheld the decision during an emergency telephone appeal. Minutes later, having just been told that she probably would not survive the surgery, the woman who had courageously cheated death for fourteen years was rolled into the operating room. The fetus died within two hours. Two days later, Angela Carder died, never having received the cancer treatment she requested.

Despite her death, the Estate of Angela Carder, administered by her parents, Daniel and Nettie Stoner, represented by the American Civil Liberties Union, pursued an appeal of the Caesarean section order to the entire Court of Appeals for the District of Columbia. The parties submitted legal arguments concerning the constitutional right to make health care decisions and the purported state interest in protecting a viable fetus. More than 120 civil rights groups, health care organizations and health care professionals, including the American Medical Association and the American College of Obstetricians and Gynecologists jointly filed amicus (friend of the court) briefs on behalf of Angela Carder, opposing the hospital's use of a court to resolve medical treatment issues.4

At the same time, the ACLU, on behalf of Estate of Angela Carder, instituted an unprecedented civil action against the hospital for damages, claiming discriminatory treatment of her cancer and pregnancy, hospital negligence, medical malpractice, the lack of informed consent arising out of the treatment of Ms. Carder and the decision to require a court to determine the course of medical care (Stoners U. George Washington University Hospital, et al., Civil Action No. 88-0M33 (Sup. Ct. D.C.)).

On April 26, 1990 the D.C. Court of Appeals en banc in In Re A.C. vacated the court-ordered Caesarean and held that Angela Carder had the right to make health care decisions for herself and her fetus.5 Seven months later, but only days before the scheduled trial in the Stoner case, the hospital agreed to settle the claims in the civil action by the payment of an undisclosed sum of money to the Carder estate and the development and adoption of hospital policies which implement the Court of Appeals' decision protecting the rights of pregnant patients to make health care decisions.

According to GWUMC, it "learned a great deal from the Angela Carder case, from the court's findings and conclusions in In Re A.C. and from the subsequent lawsuit brought by [her] family... This case motivated the hospital to examine carefully this area of law and ethics to establish an effective institutional framework for responding to complex situations in the future and to prevent the unnecessary and sometimes detrimental resort to the courts to advise the hospital in a particular situation."6

Patient Choice Governs Under Law

A study conducted in 1987 reported that more than twenty-one hospitals in the last decade sought court direction on how to treat pregnant women who refuse medical recommendations to protect their fetuses.7 Fifteen court orders were sought in eleven states. All but two were granted.8 Except for In Re A.C., however, none were decided on a fully developed and carefully studied factual or legal record. Moreover, the only other case considered by an appellate court was decided on an emergency motion for a stay without benefit of a record or briefs from the parties.9 Because of extensive legal briefing and the participation of numerous amici, the decision in In Re A.C. is the only authoritative opinion on the subject of compelled treatment in pregnancy. Although technically it is controlling precedent only in the District of Columbia, it will be influential in courts across the country.

Courts have long recognized a patient's right to make health care decisions free from governmental intrusion.10 The United States Supreme Court recently reaffirmed that an individual "has a constitutionally protected liberty interest in refusing unwanted medical treatment" in Cruzan U. Missouri Department of Health.11 The core principle of patient autonomy as a principle of medical ethics is beyond debate as well.12

However, in the case of a pregnant woman refusing potentially beneficial medical treatment for the fetus, the principle has been too easily set aside, and for dubious reasons. In Angela Carder's case, GWUMC actually argued that its fears of liability justified its insistence on court-ordered medical care.13 The hospital also argued that, although a pregnant woman may have an interest in bodily integrity, there was an overriding state interest in potential fetal life which created a legal duty to subvert a woman's right to bodily integrity when it clashed with interests in the viable-fetus.14 Others rationalize that a women who "has chosen to lend her body to bring [a] child into the world" has an enhanced duty to assure the welfare of the fetus, sufficient even to require her to undergo Caesarean surgery.15 The District of Columbia Court of Appeals en bane decision in In Re A.C. rejected these rationales.

The Court of Appeals in In Re A.C. tackled two profoundly important questions concerning the treatment of pregnant women. First, who has the right to decide the course of medical treatment for a pregnant patient and, second, how is that decision to be made for a pregnant woman who is incapable of making it herself. The Court of Appeals held that "in virtually all cases the question of what is to be done is to be decided by the patient - the pregnant woman - on behalf of herself and the fetus."16

The court went on to hold that a pregnant woman who is unable to give an informed consent, like other patients, has the right to have her decision ascertained through the procedure known as substituted judgment and then carried out.17 In reaching its decision, the Court of Appeals expressly rejected the rationale that women may be compelled to undergo surgery simply because they chose to become pregnant, stating unequivocally that "a fetus cannot have rights in this respect superior to those of a person who has already been born."18 Neither the viability of the fetus nor the potential harm to it are factors that can be used to justify overiding the woman's wishes.

To tolerate compelled invasive medical treatment of pregnant women would vest the fetus with rights superior not only to those of the woman whose medical choice is subordinated, but also to those of existing children who have no right to compel parents to undergo surgery or to donate organs for their benefit 19 This ruling is consistent with other trial and appellate court decisions which have similarily rejected the argument that a pregnant woman has a legal duty to guarantee the health and well-being of her fetus.20

Although the court did "not quite foreclose the possibility that a conflicting state's interest may be so compelling that the patient's interest might yield," the court could think of no "extremely rare and truly exceptional case in which a pregnant patient's rights could be overridden." 21 Even though Angela Carder was deemed to be at or near death's door, and she was deemed to carry a viable fetus, the court categorically stated that hers was not such a case.22

Thus, it is clear that neither the viability of the fetus nor the potential harm to it are factors that can be used to justify overriding the woman's wishes, nor is the fact that the intrusion on the woman might be deemed small given her health condition. Under the criteria in In Re A. C., none of the cases which found their way into court and resulted in court-ordered medical treatment would be legally justified or constitutionally permissible. As the court itself emphasized, "it would be an extraordinary case indeed in which a court might ever be justified in overriding the patient's wishes and authorizing a major surgical procedure such as a caesarean section."

Prominent Health Care Organizations Condemn Compelled Treatment

Almost immediately after news of the court ordered Caesarean in Angela Carder's case was released, the Ethics Committee of the American College of Obstetricians and Gynecologists (ACOG) issued its opinion entitled "Patient Choice: Maternal-Fetal Conflict." 23 The Committee recognized that "obstetricians have sometimes resorted to courts to seek orders for treatment which has been refused by a pregnant woman." Having reviewed those situations, the Committee concluded that court orders have a destructive effect on the pregnant woman's autonomy and on the physician-patient relationship. ACOG concluded that "resort to the courts is almost never justified."24

Similarly, after a comprehensive and thoughtful study, the Board of Trustees of the American Medical Association (AMA) recently concluded that judicial Intervention "is inappropriate when a woman has made an informed refusal of treatment designed to benefit her fetus."25 Uncomfortable with an "absolute rule," the AMA policy does suggest that "if an exceptional circumstance could be found" it might be appropriate for a physician to seek judicial intervention.26 Such a circumstance would only exist where medical treatment "poses an significant or no health risk to the woman" (such as oral administration of a drug which would cause no ill effects in her own body), entails minimal invasion of her bodily integrity and would clearly prevent substantial and irreversible harm to her fetus."27

A Caesarean section would never qualify. As the AMA pointed out, "given the current state of medical technology, it is unlikely that such exceptional circumstance would occur." Even then, the AMA makes clear that such a situation, if it could ever be found to exist, does not mandate compelled treatment.28 The AMA strongly admonished that "the fundamental principle against compelled medical procedures should control in all cases which do not present such exceptional circumstances."29

The policies of the AMA and ACOG represent recommended standards for the delivery of health care to pregnant patients. Those standards do not condone compelled treatment in any of the situations which have found their way into court in the past, including cases where there is full placenta previa and a Caesarean section would benefit both the woman and the fetus.30 Although few women reject medical recommendations, the clinical situations which resulted in court-ordered treatment are both common and predictable and, in that sense, cannot be deemed truly extraordinary. In addition, court-ordered Caesareans, by virtue of their invasive nature and degree of risk to the woman alone, could never he reconciled with the above standards. Any physician or administrator who seeks court orders to override a patient's informed refusal of treatment must understand that those actions are now outside the recommended norms of clinical and ethical behavior.

The Need for Hospital Policies

Cases involving requests for a court order to perform a Caesarean section or other medical procedure are typically treated as emergencies.31 However, as the Court of Appeals recognized in In Re A. C., courts are poorly suited to the task of determining appropriate medical treatment in emergency situations. 32Under emergency circumstances, judges and lawyers lack the time to review applicable law or to understand complex medical information. As the Angela Carder case demonstrates, important clinical information may be overlooked. (The neonatologist did not review Ms. Carder's clinical records or laboratory data which reflected fetal compromise, certain cancer specialists were not contacted to provide important evidence concerning Ms. Carder's prospects and the risks to her of performing the surgery, and during the hearing not a single person knowledgeable about Angela's current status was called to testify.)~ Poor women and women of color are far more likely to be subject to compelled treatment.33

Obstetrical cases also involve inherent medical uncertainty with no guarantee that any medical treatment decision will in fact lead to the best outcome for either the woman or the fetus. In several cases in which doctors predicted near certain problems for the fetus, the feared problems did not materialize.34 Recognizing the problems inherent in judicial evaluation of uncertain medical evidence, the United States Supreme Court has held that the determination of viability is a matter for "the judgment of the attending physician on the particular facts of the case before him."35

Against this background, the need for thoughtful, responsible policies is apparent. Few hospitals are familiar with the rights of pregnant women to medical self-determination and with the applicable legal and ethical principles which protect that right. The George Washington University Medical Center typified most institutions. When the Angela Carder situation arose, neither its administrators nor general counsel understood the legal status of a fetus nor how to apply the ethical and legal principles that should have governed their actions. Its ethics committee was not yet fully formed. 36

From the fact that certain restrictions may be placed on post-viability abortions, they wrongly assumed that there were limits on the woman's right to maintain her own health. Confusion also existed over how explicitly the patient's wishes must be expressed. Failing to do their homework before the situation arose, the hospital tried to shift responsibility for the treatment decision to the court. And, without complete or accurate medical information or time for legal research and arguments, the judge erroneously made an impermissable trade-off between Angela and her fetus.37

To minimize the risk of error which necessarily inheres in hasty, poorly informed decision-making, hospitals which offer obstetrical services should adopt policies which reflect their ethical and legal obligations to their pregnant patients. The formulation of such policies will assure that an educated body exists within the hospital that is familiar with the legal and ethical limits on health care. Detailed policies will inform the decision-making process when an unusual or complex situation arises. Indeed, with the study of the legal and ethical issues involved in the Angela Carder case, GWUMC now recognizes that resort to courts is often detrimental to patient and institutional interests. In response, GWUMC has adopted policies which not only would have prevented the court petition in the Angela Carder case but will prevent unnecessary resort to the courts in the future.

A pregnant patient's refusal~~ of treatment should not pose any risk of liability for the physician.

Consistent with the ACOG guidelines, the policies adopted by GWUMC recognize that, as a corollary to its obligations to a pregnant patient, the physician is ethically obligated to consider the health of the fetus, as well as that of the pregnant patient, in assessing the range of medically reasonable treatment options.38 This is fully consistent with the longstanding doctrine of informed consent, which requires the physician to advise the patient of the risks and benefits of the full range of reasonable treatment options. However, once so informed, the policy explicitly emphasizes that treatment choices are left to the patient.

When a pregnant woman refuses recommended medical treatment, the feelings of frustration and perplexity by physicians are perhaps understandable. Nevertheless, those feelings, even by beneficient medical staff~ do not justify involving lawyers and courts to compel compliance with medical recommendations. Even less justifiable are hospital petitions to "test" the abstract acceptability of medical decisions. Recognizing the range of emotional responses to treatment decisions, GWUMC policies permit the treating physician or institution to withdraw from the doctor-patient relationship under certain limited, highly unusual circumstances, rather than to impose their views on the patient through court-compelled treatment. This possibility, if communicated early in the doctor-patient~ relationship, will encourage the physician and patient to discuss refusals of treatment before a medical emergency arises. It also provides an essential and important fact upon which a patient may decide whether to continue treatment with that physician or institution in light of her values and the willingness of health care providers to abide by them.

Adopting the recommended ACOG and In refusal A.C. standards, the policies emphasize that resort to the courts is virtually never justified, and decisions concerning health care should be resolved in the doctor-patient relationship. If the physician satisfies the obligation to provide adequate information relative to the treatment decision at hand, a pregnant patient's refusal of treatment should not pose any risk of liability for the physician. Although a hospital or physician could be liable for negligently informing or disregarding the medical decisions of a patient,41 there has never been a case subjecting either to liability for respecting an informed refusal of treatment by a pregnant patient. Thus, in pregnancy, as in other areas of health care, the doctrine of informed consent properly governs the decision-making process. Policies which expressly reaf~ the applicability of these principles for pregnant women will reassure medical and administrative staff that it is proper and desirable to respect informed refusals of treatment by pregnant patients and discourage unnecessary and detrimental use of the courts.

Risk Management and Patient Choices

In their zeal to limit potential liability, some members of the health care community have resorted to defensive practices. Indeed, in the Angela Carder case, the hospital contended that its fear of liability justified the court proceeding in that case.42 Rejecting a patient's informed choice, however, poses an equally great risk of liability for the hospital. Patients have the right to make their own decisions about medical care, and hospitals and their medical staff have a commensurate duty to accede to those choices. Insistence on judicial decision-making that subordinates patient choice to institutional self-interest (such as the hospital's business interest in risk management) may constitute institutional negligence. where there is 110 responsible physician recommending contrary treatment, as in the Angela Carder case, the doctor-patient relationship which a patient relies upon in submitting to hospitalization is eviscerated.

Moreover, in situations where administrators take over the direction of treatment decisions, the mandatory responsibility of the medical staff for patient case which is reflected in the standards for accreditation is illusory. Such encroachments on the doctor-patient relationship could be viewed as vitiating the patient's initial consent to be admitted, as abandonment by the responsible physician and as a violation of the standards of care reflected in accreditation standards, hospital policies on informed consent, and patient bill of rights, to name only a few.

The doctor or hospital's failure to present full information at a judicial hearing presents other potential grounds for liability. A physician has a legal duty to the patient to advise her of all the risks and benefits of alternative treatment options which a reasonable patient might deem material.43 When a court is called upon to make the treatment decision for the patient, the duty to inform should necessarily be transferred to the substitute judicial decisionmaker.44 Thus, a treating physician or an institution which obtains a treatment decision from a court without providing it with all the medical and health information may well be found negligent.

By contrast, hospital policies which respect patient autonomy, promote informed choice by the patient and circumscribe the role of courts in medical treatment decisions will minimize, if not eliminate, potential liability.
Experience teaches that patient refusals of medical treatment are most45 often caused by failure of communication and trust.~ Thus, policies designed to enhance the quality of the decision-making process will reduce refusals of therapy in a voluntary, collaborative fashion. Doctors or hospitals faced with a treatment refusal may best protect themselves by obtaining a signed and witnessed form which attests to the information given the patient about herself and her fetus of alternative courses of action. The medical community must understand that "no statute, regulation or judicial decision places an affirmative duty on physicians or other practitioners to seek a court order that would override the wishes of a competent adult patient, including a pregnant woman. "46 It is therefore "unlikely that a practitioner could be held legally liable for honoring a pregnant woman's informed refusal of treatment." 47

Conclusion

Forced by the Angela Carder case to study law and ethics involved in compelled treatment, GWUMC adopted policies which implement the doctrine of informed consent for pregnant women as well as all other patients. While the adoption of such policies resulted in the settlement of civil litigation against the hospital, the policies were independently crafted and approved by its Ethics Committee, appropriate medical staff and advisors. These policies embrace the guidelines and recommendations of the AMA and ACOG, promote the quality of the decision-making process, and anchor the responsibility for treatment decisions within the doctor-patient relationship.

If, in June 1987, GWUMC had had its policies on decision-making with pregnant patients in place, it could have prevented the tragedy which unfolded in court and in the operating room that day. Guided by the recommendations of the AMA and ACOG, other hospitals should follow GWUMC and adopt policies which will prevent the detrimental and unnecessary use of court orders and return the decision to the bedside group-the patient in consultation with her loved ones and treating physicians.

Terry E. Thornton is an attorney in the litigation department of Lowenstein, Sandler, Kohl, Fisher & Boylan, P.C. in Roseland, New Jersey, and has handled a variety of pro bono public interest cases. Lynn Paltrow is a staff attorney at the American Civil Liberties Union, Reproductive Freedom Project in New York City. Ms. Thornton and Ms. Paltrow, together with Lorna G. Schofield of Debevoise & Plimpton in New York City, were counsel to the Estate of Angela Carder. Copies of the policies and procedures agreed upon by GWUMC are available upon request from the American Civil Liberties Union, Reproductive Freedom Project, 132 west 43rd Street, New York, New York 10036

NOTES

Official Transcript of Proceedings Before District of Columbia Court of Appeals,
Oral Argument In re Angela Carder No. 87-607 (Sept. 22, 1988) at 61-78; George
Washington University Medical Center Memorandum of Points and Authorities in Support
of Petition for Declaratory Relief 1, In Re AC. (served July 8, 1987); Brief
of Appellee The George Washington University, filed in the Court of Appeals of the
District of Columbia in In Re A. C., at 12-13, 19-20.

Affidavit of Jeffrey A. Moscow, M.D.; filed in In Re A. C., at 11.

Trial Transcript, Superior Court of the District of Columbia, Civil Division,
Number 87.607, Tuesday, June 16, 1987 at 17.

In contrast, only two groups defended the court's order, Americans United for
Life and the United States Catholic Conference.

This is particularly apparent in the case of court-ordered caesareans where 24 percent of the women did not
speak English as their primary language. Kolder, supra n.[3]. Appelbaum & Roth,
Patients Who Refuse Treatment in Medical Hospitals, 250 J. Am. Med. Aasoc. 1296, 1298 (1983); Pres. Commission, Making Health Care Decisions at 69-70.